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QuiltDiva51 update


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#1 quiltdiva51

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Posted 20 December 2011 - 10:34 PM

Finally have a date for entering the local transplant center for my BMT. Going in Jan. 13; two days of chemo, a day off or so, then the transplant. Then we start counting days - after 100, I might be heading towards healthy! In-patient time is 30 to 35 days - I'm calling it jail.

We had two donor (non-family) matches; dr was pleased he had two to pick from. Both were young women, out-of-state, and that's all I know. But I am very thankful for them both!

I am both excited and terrified. I am in non-permanent remission from CML in blast crisis and ALL and feeling well, except tired. Going in "healthy" helps a lot. But the huge increase of chemo scares me; I have not been sick at all from the 4 sessions I have had (except very minor things). This will be a heartier blast and cause more side effects. But I am told this is my only recourse, so bring it on! I am ready to get on with the rest of my life!

I will have Internet access during my jail time. I will try to update here when I am feeling like it. Trey, any suggestions to get through this???

Happy Holidays and blessings to all here. QuiltDiva



#2 Trey

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Posted 20 December 2011 - 10:53 PM

Now: Eat well before the transplant starts.   Exercise every day.  Clean your house now like your life depends on it when you return to it.  Make your family become clean-freaks.

After transplant: Germs are the enemy.  Be rude to everyone who comes close to you without washing their hands first.  Don't kiss anyone. Treat your friends and family who visit like they carry the plague. Tell them that their breath could kill you, so back off. Learn to say "stay back, or I'll smack you".  Get a nurse who is a real b-witch about cleanliness.  Don't touch your face.  Treat every surface like it contains deadly bacteria.  In other words, become a clean-freak, and DEMAND the same from everyone around you.  Kindness can kill -- be obnoxious about cleanliness.  (Did that communicate?)

http://community.lls.../message/101607



#3 tranier

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Posted 24 December 2011 - 03:44 PM

Happy Holidays and wishing you the best!  Please post to the transplant group, as they will really be able to offer great advise post transplant!   BJs transplant experience was very similar to induction...even though chemo more intense...Trey s advise about cleaning so true...stock up on Lysol wipes and bleach!  Another great support is bmt.org, several foods there had transplant for CML dx ...We will be saying prayers for you and sending lots of support!  Consider starting a caringbridge.org website to keep everyone informed!



#4 pamsouth

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Posted 24 December 2011 - 05:31 PM

Trainer, 

Regarding the cleaning supplies.  I recently switched over to products by Melaleuca.  You can google Melaleuca and find their website.  Anyhow they have many echo friendly products that are not toxic.  I love the laundry detergents.  They also have dog food, health bars, insect repellent, hand and lotion creams, hair care, oral, the list goes on and on. 

I am of the belief that many of our cancers are caused by chemicals.  Our home is hardwood and tile floors.  We have a shark steamer that does a great job, no chemicals.

Caringbridge,org is wonderful I used it for my son this summer, he was in the hospital for 88 days, it would have been impossible to answer the phone calls, and call everyone.  I have a friend who has been battle breast cancer for about 7 months now and she also uses CaringBridge.Org.  She is not doing well, had 7 chemos,  3 surgeries in two weeks, waiting for radiation.  Don't know if the cancer is under the breast bone and lrynax too, they took 20 lymph lymph nodes from under her arm and chemo had killed the cancer there, however it is much worst then they suspected.

Seems like we are really getting hit these days with all kinds of cancer.  Sometimes I even wonder if the children cancer might have been from some chemicals the mother had been around.

Anyhow I heard a oncologist say a few years ago if you see what I see you would never handle a chemical without plastic gloves.  I do have the outside sprayed by professionals, as we have woods and a creek nearby.  I like to do plant my flowers,  but I don't handle the soil and mulch, etc without gloves.

Anyhow be careful with the toxic chemicals. I do hear that after a transplant everything has to become sterile at least for about a year.  Every bug and virus and mold, in the world looking for a host, no immune system the host would be you!!

I need to check out the transplant group.  I guess I would just click on the discussion board and find transplant topic.  Acutally I have 2 donors a sister 11 years older and a brother 2 years younger, neither are in good shape.  I was diagnosed at age 57 with CML so the new  TKI became safer then the transplant at least at that time, I think they are probably still pretty dangerous at least for us older folks. 

Merry Christmas,

Pam South


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#5 Marnie

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Posted 24 December 2011 - 06:40 PM

Best of luck, Quiltdiva.  We'll all be thinking of you.  Have a very happy holiday season!

Marnie



#6 pamsouth

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Posted 24 December 2011 - 10:14 PM

Was just wondering how old you are?  Do you have another thread somewhere about the beginning of your journey with ALL.

Will be following your journals, with prayers.

Merry Christmas that you are blessed with not only 1 but 2 donors.

PamSouth


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#7 clemsoncash1

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Posted 25 December 2011 - 12:05 AM

I just passed day 210 or so after a MUD transplant for CML that blasted ALL.  The chemo wasn't too bad except the mouth sores, and TBI was just draining.  The best thing I think that helped me was just walking every day even if it was just 2min spurts the moving and sense of activity helped.  I had Internet, but the week right after transplant I didn't even feel like using.  Just waked or rode the stationary bike, slept whenever I could, tried to shower everyday, and made full use of the morphine pump.

Matt



#8 Happycat

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Posted 25 December 2011 - 08:57 PM

Good to hear from you, QD!  I'm glad to hear all is proceeding well.   You're a strong woman, and you can take whatever the chemo has to dish out!  Have a wonderful Christmas, and please do keep us updated while in jail.

Traci






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